Monday, November 25, 2013

Somebody out there loves me! I'm humbled to say that Despite Lupus.com has been nominated for the "Best Health Blog of 2013" by the editors at Healthline.com. What an honor! Of course, there's voting to be done, between now and January 20th, 2014, so if you have a moment, click on the Vote button below. Wouldn't that be fun to see a lupus blog rise to the top? Thanks for your support - I wouldn't keep writing if you didn't keep reading, so thanks for sticking with me over the past 5 1/2 years!

Wednesday, November 20, 2013

Time for the Pillbags to gear up for the holidays! We have three gift shows in three weeks - thank goodness Johnny and my sister (and maybe even my father-in-law!) will be on hand to help man the booths. Here are all the details you need for the upcoming events. Be sure to mark your calendars, grab a friend, and come by and see us. We'll be so glad you did!

Monday, November 18, 2013

I'm thrilled to announce that the Pillbags are now gracing the shelves at Reunions Gift Shop in Alexandria, VA! This store is MORE than just a gift shop - it's a feast for the eyes. They carry unique, fantastic finds - I guarantee you'll leave with more than a Pillbag!

Reunions has a great presence on Facebook (almost 5K likes - geesh!), and the store even has an app, complete with in-app deals. I first discovered them in The Scout Guide, Northern Va, Vol. 1, and then graphic artist friend Sarah Hollander thought the Pillbags would be a great fit for Reunions. I think the owner and I would agree!

Friday, November 15, 2013

Exciting news in the world of lupus research! Looks like researchers at Northwestern University have made great strides in designing a new non-toxic therapy that suppresses lupus in blood samples. The hope is that this treatment will replace drugs that carry nasty side effects (prednisone and cytoxin, to name a few!) with a vaccine-like therapy. This new treatment could keep lupus in remission in the body. Wouldn't that be amazing!?!Read the entire article here, and check out the snippets below:

Previous studies at Northwestern have showed that a nontoxic therapy using small pieces of proteins known aspeptides can block lupus in mice prone to contracting the disease. The peptides produce special regulatory T cells that are vital to suppressing the disease.

This new study was comprised of 30 lupus patients, ten of whom were active and twenty who were in remission, along with fifteen healthy patients. Each person had a blood sample cultured with low doses of the peptide.

Senior study author Syamal Datta, professor of medicine-rheumatology and microbiology-immunology at Northwestern University Feinberg School of Medicine, said, “We found that the peptides could not only generate regulatory T cells, but also that they block and reduce auto-antibody production to almost baseline levels in the blood cultures from people with active Lupus.”“This approach shows that the peptides have the potential to work like a vaccine in the human body, to boost the regulatory immune system of those with Lupus, fight autoimmune antibodies and keep the disease in remission,” Datta added. ***Makes me tingle all over just thinking about the prospect. Here's hoping the Phase I Clinical Trials get underway soon, and experience the same success. My fingers are double-crossed!

Monday, November 11, 2013

Tapering off prednisone does not come easily to me. My body never seems to remember how to do it, no matter how many times I've been through it!

Of course, the higher the dose and the longer I've been on steroids, the trickier it can be. I remember all too well trying to taper off 60 milligrams years ago. Even getting below 20 mg a day seemed to be a monumental feat. Today, my dosages of steroids are much lower, thank goodness, but tapering is still tapering. With my recent flare that started at the end of August, my doctor increased my dosage to 10 mg every day, which seemed to do the trick. And since that time, I've successfully reduced my prednisone twice, with very little backlash from the ole' joints. Hooray for a subsiding flare!

I still have another step to go to get down to the maintenance dose I've been on for years, but my doctor is in no rush. I just made the switch to alternating 5mg/2.5mg last week...and am still basking in the glory of my success. Another month, and then I'll taper again. Now that timeline, I can handle!

No matter how slowly I taper, or how smoothly it goes, however, I can't help but get a little nervous when the day arrives that I have to start a lower dose. I used to get pretty anxious about the whole process, because I so desperately wanted my body to cooperate, and I longed to be able to tolerate the lower dose. But today, I've learned to balance that feeling of desperation with the knowledge that tapering, just like so many things in life, isn't an all or nothing thing. Here are three thoughts of consolation that give me the courage to try that lower dose, to split those pills, and to bravely withstand steroid withdrawal:

1) If it doesn't work, I can always go back up.

My doctor has never been unreasonable. If a treatment isn't working, he tweaks it. If my disease is getting worse, he deals with it. So while he may direct me to taper off prednisone, I know he'd never leave me floundering if my body didn't respond as hoped. If I need to go back up, he makes the call. I've learned that while he strives to use the medications as judiciously as possible, he attempts to keep me as comfortable as he can along the way. And through his tutelage, I come to realize that just because I'm not successfully able to taper one week, doesn't mean my body won't be game the next. I think the phrase "tapering off steroids" should come with a disclaimer: Patience Required!

2) My doctor believes in me.

It may sound silly, but just knowing that the doctor believes that my body may be capable of tapering off a dose helps me make the move. I know it's not a perfect science, and there's no guarantee that my body will respond to the medication as he thinks it will. But I still appreciate the vote of confidence. In my opinion, this is where positive thinking comes in: not so much in willing your disease activity to subside, but rather, in finding the courage (be it from the confident plan put forth by your doctor) to take steps that will allow you to keep moving forward in the management of your disease. Whether it's going down on a medication to stave off crummy side-effects, starting a heavy hitting drug that could finally get your disease under control, or making monumental changes at home or work that will ideally improve your life with lupus - every little bit of encouragement helps!

3) I know what to look for.

By now, I'm a champ at assessing steroid withdrawal. The first day I go down on my dose, I'm going to feel crummy. The second day, still crummy, but no worse, maybe even the slightest bit better. The third day, better still, and so on. Ideally, the increase in symptoms (be it flu-like symptoms, increased fatigue, joint pain, fever, etc.) should incrementally subside as the days march on from the start of the lower dose. The key here is that they get better, not worse. So it's my job to communicate back to my doctor, if my body isn't reacting as planned. As long as I'm honest and open about the severity and frequency of my symptoms, my doctor can successfully determine whether or not the change in medication is working. Knowing what to expect, and then using the tools I've been given to determine if those expectations are being met makes it so much easier to take that first step!

Note - my doctor and I usually allow 2-7 days before making an assessment of the success (or failure) of my tapering. Please consult your doctor for your own plan of attack!

Friday, November 8, 2013

I can't deny that I'm a pretty decent cookie baker. Goodness knows I bake enough batches of cookies a year to get it right. (I estimate 3 batches a week - you do the math!)

As far as chocolate chip cookies go, I have a recipe that I've used since I graduated from college, perfected over time, with slight variations on the Nestle Toll House recipe: a little extra flour, a little less brown sugar, extra chocolate chips, and a couple handfuls of M&M's (a la GG!) And I'm humbled to say that I've won awards for my cookies, received requests from around the world for a batch in the mail, and continue to bask in the glory of any compliment received for my small contribution to the sweet things of the world.

So here I am, with a coveted recipe for cookies that never fails to work, comes out perfect every time, and always brings a smile to one's face. Should I mess with success? Should I attempt to spice up the recipe? Should I try to enhance the cookies' flavor even more?

Too late to say no. Earlier this week, I tried a new twist on a chocolate chip cookie recipe, and it failed. Miserably. I'm not embarrassed to say that my pinterest board is chock full of chocolate chip cookie recipes, but I don't believe I'll be trying another one anytime soon. I've decided not to waste my precious resources of butter and chocolate chips on a "maybe". I'm dedicated to sticking with what works.

I find that my tendency to tinker with success doesn't stop at baking. Every six months or so, I start thinking long and hard about my afternoon nap. Should it really be two hours? Could it be shorter? Could I consider skipping it, or taking it earlier in the day? Could I even move it to later in the evening? Could I increase my night sleep by an hour or two to make up for no afternoon nap?

But then I take a step back and look at the facts: my 2-hour nap in the middle of the afternoon works. I've done it practically every single day since 2004, and it's been a key ingredient in managing my chronic illness. On the days I take a nap late, I suffer. On the days I take it too early, I suffer. On the days I attempt to take it in a plane, train, or automobile, I suffer. If I'm distracted, or uncomfortable, or skimp in any way, I suffer. So why should I mess? The gratification and success I've experienced from inserting a nap into the middle of the day is immeasurable. I would actually say it's the single most effective change I've made in my life with lupus - and I'm proud that I've discovered a solution that works. It required overcoming a few physical, mental, and logistical hurdles along the way. But those obstacles are behind me now - though I can't deny that the latter two require a bit of finessing now and again!

So when it comes to my nap, I'm going to play it straight. I may have tried. And I may have failed. But I vow not to try again.

As far as the cookies go, I pledge the same vow...at least not in this week's batch!

Wednesday, November 6, 2013

Hospital for Special Surgery (HSS) and S.L.E. Lupus Foundation, both of whom I've had the pleasure of working with in the past (here and here), have teamed up for a Facebook Chat tonight from 5:30 to 6:30pm EST. Here's the link to their page, and note that their last chat in May 2013 reached a whopping 6,500 people and involved more than 100 participants with questions and comments. A panel of experts will be on hand to answer your questions. Be sure to catch the online event...from the comfort of your home or office!

BUY THE BOOK

Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.